Open Letter to Doctors, Nurse & Dieticians

 So. I have had this whole CKD thing on my mind night and day lately. After I got my last lab results back, I spent several hours just sitting in the dark of my room, crying and frustrated, and mad. Praying helps. Thinking of all that I have to be grateful for helps. But I'm still just so irritated.

I'm irritated with myself, irritated with this damn sarcoidosis, irritated with the lack of public information about health issues, and just irritated with it all.

The sarcoidosis started this ball rolling but the blame for it picking up speed lies first with me. I let my weight balloon. I wasn't being careful about reading nutrition labels. I didn't take the time to realize that "eating healthy" in general doesn't mean "healthy for everyone". I didn't pay enough attention to my own health. I was so focused on my sarcoidosis in general that I didn't think enough about the specifics.

The biggest frustration is that I waited until now to educate myself about CKD. The next irritation is that in the US we don't have enough public information about nutrition and diet. We have a lot of noise about it but not enough useful information.

Nutrition labels are focused on the basis but they are not always on the up and up. The clearest information on a nutrition label is for anyone trying to lose weight. That even gets a little tricky when there is hidden or unclear labeling of ingredients.

Labels can disguise sugars and salts and other minerals by playing funky games with the names of those things. The average person trying to lower their sodium or sugar intake might not know to look for the different ways those things are named.

I found one article online that points out the different ways to "find sodium". Find sodium - because it might be hidden. Some ways sodium appears on labels?

• Monosodium glutamate, or MSG (often added to Chinese food)
• Sodium citrate
• Sodium sulfite
• Sodium caseinate
• Sodium benzoate
• Sodium hydroxide
• Disodium phosphate

At least, in this case of this list, "sodium" is part of the name. The other part of this though is when we are drawn to a particular product because of how it's described on the front label. This same article points out how the touted "low sodium", "unsalted", "sodium-free", "very low sodium", "light" and "reduced" sodium mean. For me with CKD, I'd need to really be careful about buying items labeled as "light" and "reduced" sodium. And I will be careful - now that I know.

Let's look at sugar.

As with the sodium identifiers above, there are some sugars that are fairly obvious. But then again, there are so many types of sugar that unless you are involved with food on a more-than-average level, you might miss a lot of them. Here are just some from this page where they note that 

"Ingredients are listed by weight on packaged foods, with the main ingredients listed first. The more of one item, the higher up on the list it appears. 

Food manufacturers often take advantage of this. To make their products appear healthier, some use smaller amounts of three or four types of sugar in a single product."

And some of the names of these sweeteners?   

1. Barley malt
2. Beet sugar
3. Brown sugar
4. Buttered sugar
5. Cane juice crystals
6. Cane sugar
7. Caster sugar
8. Coconut sugar
9. Corn sweetener
10. Crystalline fructose
11. Date sugar
12. Dextran, malt powder
13. Ethyl maltol
14. Fruit juice concentrate
15. Golden sugar
16. Invert sugar
17. Maltodextrin
18. Maltose
19. Muscovado sugar
20. Panela
21. Palm sugar
22. Organic raw sugar
23. Rapadura sugar
24. Evaporated cane juice
25. Confectioner’s (powdered) sugar

Of that list of 25 items, I'd say that 11 are harder to spot as being "sugar" or a sweetener - unless you pay close attention. And I think that brands count on us not paying attention.

Another thing I recently realized is that some things are not even evident on food labels. For example, phosphorus is something I have to watch in my diet. Wanna try identifying that on labels? I didn't even know it was a thing to watch for before now...

What frustrates me about this is that brands are allowed to manipulate the information on labels at all. If cigarettes come with warning labels - and only x amount of people smoke them - shouldn't food labels be held to a higher standard? I mean, everyone eats. From the moment of conception, we are in some way affected by nutrition.

Remember when we found out that "diet" sodas weren't as healthy as would be assumed by the use of the word "diet"? 

So I am frustrated as much by the food industry as and the guidelines they are allowed to play with as I am by myself.

I didn't just now start to pay attention to my health. If you've read my blog at all, you've known about all the times I was tweaking my diet to add what I thought of as healthy foods. For the past couple of years, I've been eating lots and lots of greens and healthy fats. I've barely eaten any fast food at all in over 4 years. The only real thing I knew that I was playing fast and loose with was red meat. Even then I would go for the lean stuff. And I damn near went into debt the past year by switching over to fish and seafood. I stopped using cow dairy (except for my coffee creamers) and went full soy. I started eating tofu. 

Had I better educated myself I would have known that all green stuff isn't good for CKD. I should NOT have been eating bunches and bunches of collard greens with "low sodium" seasonings. I'd have known to watch for some of the "good fats" like my beloved avocados. I'd have known that switching from chips and cookies to seeds and nuts wasn't the smartest thing. I'd have known not to add chia seeds to my diet.

I right now have (or have given away) a king's ransom of "healthy" foods I can no longer freely indulge in:

• A jug of chia seeds that I was adding to daily smoothies of spinach and fruits.
• 3 different bags of brown rice and 1 bag of wild rice
• whole-grain pasta noodles
• veggies noodles
• whole-grain bread mix to make in my bread machine
• canned and frozen mixed vegetables 
• bags and bags of pinto beans
• frozen spinach
• tomato paste and sauce and stewed tomatoes (2 of the cans were reduced sodium)
• pasta sauce
• refried beans
• whole-grain tortillas

And on and on.

I was proud of how I was eating. I gave up orange juice last year when I was warned about it and started buying pineapple juice - for my spinach and banana smoothies!

So, basically, I was probably being kinder to my kidneys when I was eating a lot of pasta and rice and yellow cake with cream cheese frosting...

The thing that has made me maddest is that, if there were more specific food and nutrition education, there would be fewer people dealing with CKD, high blood pressure, diabetes, etc.

What I knew before now was to avoid pork, processed foods, orange juice, and anything with a lot of seasoning. What I didn't know was to avoid foods that are often seen as "healthy". Those foods are healthy for some or even most people but not for me. Not for anyone else with CKD.. 

Don't just tell people that too much salt and sugar is bad for them. Tell them where to find salt and sugar in common foods. And try to be clearer about the yays and nays of daily nutrition. Especially when they are dealing with CKD or weight issues or heart issues.

Anyway.

I will be seeing a new nephrologist soon. The first thing I am going to ask for is to see a dietician. I think I mentioned that before. I don't know. Can't remember because I'm too hungry and stressed out. I believe I mentioned that I'm down to popcorn, toast, and coffee with rice milk at this point. 

Peace

--Free

The Popcorn Diet

 Heads Up: I've got some draft posts (not yet published here) on the subject of my bad kidneys. Just telling you that so when I finally post everything you won't be confused. I'm posting this one now because it's an easy rant...

So.

I've been having a hell of a time trying to figure out what I can and cannot eat in order to stop any further damage to my damn kidneys. Sorry for the fussing but... this year has been sheer madness at less than 3 months in!

Anyway. Back to the kidney thing.

At my last infusion, my lab results showed creatinine levels that have once again jumped back into the stratosphere. They go up and down but lately, they mostly have only been going up. A wee little bit at a time. ("Wee", get it?)

Anyway, I am so deadly terrified of having to ever go on dialysis that I am working my hardest to watch everything that goes into my mouth at this point. The one crazy thing is, I never had to worry about my kidneys until this damn sarcoidosis. I never was seriously sick before this. One side of my family has kidney problems, the other side tends to get cancer. I never had either.  The other crazy thing is, my latest creatinine jump is probably from all the "healthy" eating I was doing in the weeks before the last infusion. I will get to that in a minute.

Again. Anyway.

So I am over here giving myself a headache trying to decipher nutrition labels and other information to see what kind of foods I can safely enjoy. I made lists of those that are okay, not-so-okay, and no-no-no. Then I would find contradictory information. Then I would have to move foods from one list to another.

When I ended up crying and feeling dumb because my brain kept getting all muddled up, I decided to find a food app specific for CKD (chronic kidney disease). Guess what? There are apps for almost every ailment known to modern man but just about none for what I need.

Next, I tried just organizing a bunch of lists, recipes, suggestions, etc using One Note. Fabulous thing, that One Note (but only "for Windows 10 version). I've got most of my life organized in my DIY notebook system and One Note. One Note is more for things like recipes and useful info I find online that I will need to refer back to often. And I already told you how my notebook system rules my daily life.

While One Note is great for clipping and storing all the information about kidney health, foods, etc., it still isn't great for my practical needs like grocery shopping and meal planning and won't be until I get myself familiar with all the info.

I did go back to using the Cronometer app I liked once when I was playing at losing weight. So far, it's the best app I've used just to keep an eye on what I call the Big Three: potassium, phosphorous, and sodium. It's so good in fact, that I want to find out if my insurance might cover the Pro version. With that one, I can share the information with my doctors. Very cool, right? For now, I am using some of the money I'm saving on groceries to pay monthly for the Gold version. It's ridiculously pricey (IMO) at almost 10 bucks (with tax) per month but it's so useful. There's no better way I know right now for tracking the Big Three.

Like with all apps, I have to log or scan everything I eat. Okay. Fine. That's a real pain in the butt. However, I am determined NOT TO BE ON DIALYSIS anytime soon. And by "soon" I mean before I die of almost anything else. 

Until I can meet with the nephrologist again (and, hopefully, a dietician who doesn't hate food), I am just being so, so careful. The easiest way for me to do this is to stick to the few things that should be safe to eat. This is what I have so far:

• Rice milk (not enriched because, somehow, enriched is worse for me? I can't remember why.)
• Coffee (I am sticking to a 10-ounce serving in the morning & softened with the rice milk.)
• Popcorn - made with kernels and the tiniest bit of oil. I season it with 1/4 teaspoon of sea salt. For some reason, sea salt is supposed to be better than regular table salt. I don't remember where I read that or why it is.
• Rice cakes. 
• Apples and red grapes. Love the grapes but only like apples when I want on. I'm trying to decide if I can just use them for some kind of decent dessert dish.
• Cabbage. I like cabbage when I like cabbage but find it a pain in the tail to deal with.
• Water, water, water, and more water.

The first day I was trying to use the Cronometer app, I had coffee with rice milk, popcorn, and a rice cake. The phosphorus and potassium levels seemed good but my sodium level was at 70% of the daily allowance. I set that daily allowance from reading on what I should have - 2300mg or less. And I was gassy all day. Ugh. Actually, I just realized that I did not use all my salt for the day. I still have some in the little container I keep the day's sea salt in.

and those carbs...

Last night (of my second day using the app), I fasted. I figure if I throw in fasting from 7pm to 11am, I am not missing much. It's not like I'm excited to eat anything I'm allowed.

Again, anyway...

So today is going to be all about trying not to think about the delicious food I can't have. Or rather, not thinking about those foods. 

To be honest, this will probably be the best thing ever for losing weight. I just can't deal with so much meal prep. I've gotten used to fixing enough of something to last for a few days. A big pot of pinto beans cooked with some ground beef to eat with rice or cornbread or tortillas. Sandwiches with avocado and tomato. Some on-sale shrimp or fish to smother in garlic and onions. A baked potato or sweet potato. A big spinach salad with some poppyseed dressing. And my favorite "healthy" meal of nothing but collard greens to eat with fresh tomato and onions.

I think I'm up to Crazy Thing #3 here: Everything I thought I was eating that was healthy is not so healthy for me. For the last several weeks - maybe even the last few months - I've been eating green stuff, fish, seafood, whole grains. I actually hadn't had but maybe one loaf of plain white bread in about 4 months because I was buying the pricier whole wheat and high-grain stuff with nuts and seeds in it. Because I thought that was healthy!

Yesterday, as I was popping corn in my beloved Christmas gift Ninja, I realized that popping corn may be all I will be using that appliance for. At least until I can get this new CKD diet down.

So yeah. Woe is me. 

And I do realize that I should stop ranting and whining and be thankful. Thankful that I am not (yet) living in a war zone. That I have access to healthcare. That I have a roof over my head and food at all in my fridge. And I am thankful. I just needed to rant a bit.

Peace

--Free